CNS primary Brain Lymphoma Clinical Trials - Stell Cell or systemic and targeted therapies

dpecoraro
dpecoraro Member Posts: 1
in Lymphoma (Hodgkin and Non-Hodgkin) #1

Hi, 

 

Seeking help in finding treatment for my uncle who is currently in Buffalo, New York.  He has CNS Primary Brain Lymphoma.

 

We have one time transport for him anywhere on the East Coast and we need help in identifying potential new treatments or trials that may work.  We've been told to look for stell cell treatments and systemic and targeted therapies.  Any guidance is appreciated.  He's got a lot of fight left in him and we're trying to wade through options.  

 

In a nutshell:

  • His diagnosis is CNS Primary Brain Lymphoma

  • He has gone into remission twice, and relapsed twice.

  • He has 4 lesions on the brain, as well as lymphoma cells showing present in his spinal fluid.

  • We absolutely do not want to do whole brain radiation due to the risk of immediate onset of dementia and brain damage.

  • He underwent an Autologus Bone Marrow Transplant recently and the four new lesions were discovered early May

  • He is currently not being treated for the lymphoma by any medical professional.

  • He has had virtually NO side effects from the chemotherapy, and is in otherwise good health.

  • Time cannot be wasted, nor can we travel before knowing he will be treated.

Any help is appreciated!!!

 

Comments

  • Evarista
    Evarista Member Posts: 336 Member
    #2
    ClinicalTrials.gov

    I would start there.  Enter search term "CNS Lymphoma" and limit your search to "USA" and "Recruiting and not yet recruiting". To the first round of results, remove "Not Yet Recruitig" and add "Interventional" (that last bit is on the left-hand side of the page, under "Study Type").  Limit to "Adult." I saw 16 studies with potential, but you will need to drill down to learn more.  You could do this incrementally by restricting by state (New York, Massachusetts, etc). I did see several with the words "relapsed/refractory" in their titles and Memorial Sloan Kettering was definitely amonst the sites listed.  

    On the East Coast, I'd be thinking MSKCC, Dana Farber, Duke University?

  • po18guy
    po18guy Member Posts: 1,505 Member
    #3
    Memorial Sloan Ketering or Columbia

    Memorial sloan Ketering or Columbia (Dr. Owen O'Connor) would be my choices. I'm leaning toward Dr. O'Connor, since your uncle's case poses challenges. Dr. O'Connor is a world renowned specialist in lymphomas of pretty much all types.

  • Evarista
    Evarista Member Posts: 336 Member
    #4
    I meant to add

    That while clinicaltrials.gov may not provide a suitable trial, it can help guide you to practioners who speciallize in your uncle's particular tumor. Principal Investigator information is generally listed at the bottom of each trial description. 

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